all my benevolent monsters

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You see, I struggle, during flares with my self worth. Self Loathing slowly eats at my mental health until I am am emotional sobbing puddle of despair…especially during the long deep winter flares.

My friends, many of whom are also disabled and/or chronically ill are always quick to assure me that my productivity doesn’t make or break my value which I totally agree with and yet was not helping the emotional hole in my heart space.

But I think I figured that piece out.

My mother was always very open about the fact that she had me in order to make sure she had someone to love her no matter what, to take care of her between lovers, and when she was old and alone. This is not a good reason to have a baby, and is certainly not a healthy thing to raise your child up telling them constantly. but tell me she did. She always made it abundantly clear that my reason for drawing breath, was to care for her, and by extension people like her.

Loving her, loving people, caring for people was one of the only things I ever got positive reinforcement for as a young autistic trans person.

My mother was a lot of things to me, she did a lot of things she shouldn’t have as a caregiver, but one thing she did, for good or ill, was make me very good at taking care of people.

Or at least I was.

*que personal crisis*

The way that I was able to “earn” a place in peer groups as a young, autistic person who didn’t meet anyone’s gender performance expectations, was through caregiving. They were willing to tolerate my neurodiversity, only when I had performed that role sufficiently.…or so it seemed to me.

Not every relationship I’ve ever had has been that dynamic of course. I’m certainly not a victim, and have made plenty of my own mistakes over the years. I spent years in a little soft boy weaponized sadness toxic entitlement smog. It did not look good on me.

But it was enough of a pattern for my baby autistic brain to imprint on that mold, to develop expectations of myself as an especially effective caregiver.

The trouble comes in over the last couple years, as I have increasingly become unable to take care of myself, much less anyone else. Every single spoon I have, and more than a few I do not have, go towards navigating a massive amount of pain, new symptoms, fatigue, executive dysfunction, severe depression, and did mention pain? As well as caring for my children, trying to work as much as possible so my family can hopefully some day not be in constant financial crisis, and hopefully not being an emotional drain to the people I love.

Especially during flare season, a combination of autistic burnout, anxiety, fatigue, and shame related to my inability to reach out or properly or actively reciprocate social interaction on any level adds to my physical inability to leave the house making a deep isolation soup I have trouble escaping.

I get caught in a feedback loop, when I so desperately need human companionship in which I don’t feel like I deserve to ask for the emotional labor and support of others, when I know my ability to reciprocate that emotional labor and support will be spotty at best for many months out of every year. How can I ask people to do for me, what I am probably incapable of doing for them, most times?

The process of figuring out who it is appropriate for me to ask for emotional support and labor from can be days or even weeks long. Most of my friends are also disabled and/or chronically ill and are similarly struggling, especially in the winter months. I can’t put my never ending emotional suck on them. Then the educating people on aspects of my family’s experience can be moee draining than help so while I deeply appreciate the offer when I need it most I am unlikely to be able to reach out to an ally. Then many of my friends who share my identities and would get my experience are also marginalized in ways I am not, I am not entitled to their emotional labor, they have heavy enough existence dealing with this oppressive shit storm world, they categorically do not need my despair added to that.

even when people offer their support, if I don’t talk to that person regularly, it is nearly impossible for me to break routine or initiate a new routine to establish contact, or to ask for support that I am extremely likely to not be able to reciprocate unless they ask in turn..if I can at all. Then the shame spiral of not being able to do a simple thing, blaming myself for feeling isolated, when people have offered their support, then finally the negative self talk and self loathing. Feeling desperately emotional need, but absolutely no room or ability to ask for help.

I was put on this earth to take care of people, and I know that is unhealthy, but relationships of any dynamic need to be reciprocal, which is something I am deeply unable to provide 6-10 months out of the year.

I probably need to build new social templates but have been in autistic burn out for so long, battling deep fatigue, borrowing against far flung future spoons to get through days, that doing so seems impossible.

Though I know I need to, I don’t know how to rebuild me from here.

Hopefully this will be the first step, the planted seed that leads to blooms of self understanding, self acceptance…and dare I hope for self love?

I don’t talk to often about ethical non-monogamy, primarily because I think there are already so many people having those discussions with much more important perspectives, including the infinite Michón Neal, and deeply gifted Milton Goosby who is always working hard to be a better human, and shares that process with his readers.

But today I want to talk about something tangentially related to polya, and that is how I experience love. I recently wrote an article about the ways I don’t experience love as an aromantic, nebularomantic autistic person, but that conversation isn’t entirely complete until I talk about the ways I do experience love.

Because I have difficulty labeling and differentiating between types of love, non-hierarchical polya or relationship socio-anarchy, which to me is concerned with the overall well-being of the group or network with all parts being equally beloved, important, and relevant, is the relationship structure I thrive most in.

There have been four children born of my body, several of my partners of any definition or title have children as well who will always be family to me, a nebulous network of beloved little buddies. The duty I hold to protect and support the small people in my life, is worth mentioning, and worth mentioning first. Kids aren’t just baggage and burdens. don’t be that person.

ok, So let’s talk about love!

Just to remind everyone as we get into this I’m autistic but I’m not all autistic people. I’m aromantic but I’m not all aromantic people, I’m nebularomantic but I am not every nebularomantic person. Got it? great, let’s go.

The way that I love people feels expansive like a galaxy, there are points of burning stars, clouds, an infinity of life and light but it has no rigidity, no defined end or beginning.

As a small child my mother would try to trick me into going to sleep by telling me to visualize the entire universe and then coming to the end of it. I was supposed to basically self meditate on stars I guess, it was the 70’s after all, but what ended up happening is I would become increasingly concerned about the fact that I could not visualize any defined ending to the universe, what was there a giant wall? a fence? what was on the others side of the wall then? what could possibly be there but more universe?

That is my fundamental relationship to love these days, the way I always have loved and never had words for. There are no defined lines that I can discern. What could possibly be on the other side of my love for a person but more love?

When people ask me how many parners I have I don’t even know what to say. Some relationships obviously count, people I have talked to about our dynamics and with whom I spend one on one relationship building time with either online or in flesh space, but I also have many, especially autistic friends, my autiloves, whom I love extremely passionately. Where do I draw the arbitrary line in who to count? how often we talk? what we talk about? how they potentially feel about me? None of that makes any sense to me as an autistic person. I don’t want to conscript anyone into a relationship they aren’t interested in, I don’t need reciprocity to love them. But the love is no less real for lack of an allistic approved label.

My autiloves especially can be difficult for me to define or explain. Sometimes with other autistic people I can have an intense synergy, a spiritual vibrational synching of energies, if you will, that feels to me very similar to what people call soul mates, with none of the requirements, goal posts, or definitions. These folks I may not talk to often since neither of us have allistic social templates or ingrained rules. The combined quiet of two neurodivergent brains just trying to swim the seas of life may prevent socially expected constant contact, but that love is still deep, refreshing, growing, important love.

But what about straightforward platonic love? Well I don’t know really how to specify that, but I can tell you I have friends I love very dearly who more or less fall into a socially accepted category of “platonic” but those relationships are no less important to me, my affection for them no less important because of their friendship status.

My heart and mind aren’t hung on my genitals. My care for you does not depend on you being romantically involved with me. I’m happy to love people for their peoplehood, from afar or close up. I don’t know how to divy people into polite little categories.

So for those of you I love, thank you for being you.

For those of you who love me, thank you for giving me room to be me.

For those of you who hold me, literally or figuratively, when I am lost in the sea of my fears and depressions, I owe you my life and that is no exaggeration.

If you read this and are wondering, did he mean me just then? yes I meant you, you silly beautiful you. I love you too, in all your ways of being you.

We call the summer of 1969 the summer of love, at least in part because it was a time of social upheaval and protests, many, many protesting the rampant civil inequality of that era.

I wonder then if our children’s children will, without understood irony, call this the summer of Freedom.

The full power of the American propaganda machine smoothly transforming the desperate, powerful, furious fight, flight, and flail of oppressed people pushed to the very edge of society, to the very edge of their own lives by a government and social system working as designed, into a plucky story of American heroism and can do attitude.

If that happens it will be yet another offensive harmful lie in a long line of offensive lies. Most the people have spoken, and most the people are mildly offended, or primarily offended that they have to see it, that it is out in public. After all, we have become so good at keeping our bloody and racist history behind closed doors and in strained whispers, it hardly seems appropriate.

But the bones of this country have not changed. It was born a predator and a vulture, and no doubt it will die a predator and a vulture too.

We white people have a moral duty to fight in every way we can, not just in the ways that are comfortable. Those of us who have privilege need to be using it in every way we can to protect those that don’t have those protections. It is literally the least we can do.

We must break out of our comfort zone, lay down the weight of individualism and apathy we were raised on, listen to IBPOC who have been leading the charge all along, center marginalized voices, and use every resource we have. Every single one.

It’s 8:56 am. My children are all gathered watching the new season of Magic School Bus. The teenagers orbit around the edge of the room pretending they are less invested than they are. The sun streams warmly in the window…for now it isn’t giving me a headache. My pain levels are tolerable, what ever that means. Milton will be home soon. My social network ebbs and flows, as they do. For now I do not feel like a burden. It’s peaceful.

Yesterday we got several pieces of bad news, two of which could have long term negative impacts on our lives. My pain is better right now but my asthma is much worse. I had every intention of writing a lot for autistic acceptance month but autistic burn out has left me struggling to frame thoughts in words at all, much less once or twice a week. I stayed up late last night worrying. My nesting partner is worried as well, depressed and frustrated. We’re both frustrated. exhausted.

But right now these children are happy, we are fed, we have a home, and all is well. well enough.

We don’t need or want anyone’s pity, no saucer eyed proclemations of “you’re so brave”. We work impossibly hard for these little moments. We just want to enjoy them, to have the ability to rest now and then. We want to live. It shouldn’t be this hard.

Christmas morning 1984: I snuck into the living room in the middle of the night. The lights from the tree seemed like a gentle hug as I surveyed the presents clustered around it. Teddy Bears and bikes twinkled merrily under the lights. No pink I noticed, and breathe an internal sigh of relief. Hopefully I would only get one or two unwanted Barbies that year.

Christmas morning 1990: My face fell immediately upon opening the present in my lap. Underneath the delicate tissue paper and shiney silver wrapping paper is a universe of pink and teal discomfort. There was Teen Spirit deodorant, hair gel, hair spray, lip gloss, and other small pieces of feminine coded frippary. I looked up in bafflement at my dad. My step mother smiled a tight lipped smile at me whispering “We thought you might be better at…if you had more tools” as she gestured vaguely at her body. Shame and confusion writhed over me as I peeked at the comfortable and beloved Who Framed Roger Rabbit sweatshirt I was wearing. What was wrong with me anyway?

Christmas morning 2005: My semi estranged husband had created a beautiful winter wonderland with every day items laying around the house. We both awkwardly hyper focused on our babies and their magical experience of Christmas. I was sad but also relieved that no one was trying to force glittery baubles and pretty blouses on me or reflecting tearfully on what a lovely wife/daughter/sister I was. New words were darting in and out of my awareness nervously: transgender, genderqueer. I wasn’t sure how yet but I knew my entire universe was shifting.

Christmas morning 2007: My girlfriend and I cuddled on the couch while our children opened presents. She gave me gifts that didn’t leave me feeling ashamed and confused. I felt like I might actually really exist for the first time in my thirty some odd years of life.

Christmas morning 2010: I was a single parent, certain that I was not compatible with humanity in any meaningful way. “not fit for human consumption” I joked. But I knew myself and I was happy with the person I was becoming. I was confident and content for the first time in my life. Though I believed I was beyond love, I had language to define my reality more clearly. It was a blessing I never expected. I watched my sons open presents joyfully. life was good.

.
Christmas morning 2015: such a full and surprisingly wonderful morning. Beyond all expectations I had met a lover and friend who really sees and embraces all of me. Together we have been able to build a fundamentally healthy and nourishing relationship dynamic. My chronic illness had relatively recently forced me to quit working outside our home. There were many challenges ahead of us. It will be hard, but that day we watched our four oldest children open presents as they laughed and fussed over the new baby. Life was great.

Christmas morning 2017, A prediction: The last two years have been hard, the last year has been the hardest. My nesting partner and I are worn down in a lot of ways. Our meager social network and resources have been stripped further down outside of a deeply appreciated online community that we have deep love and gratitude for. I have in my partners and online community, people who really see and wholeheartedly want every part of me, for the first time in my life. Something strong and fragile, uncoils in my chest. Perhaps I am fit for human consumption after all. The presents are small and few but the love is very real. My nesting partner is hopefully preparing to visit our/his oldest daughter in Texas. Our holiday, whether celebrated on the solstice or X-mas is an honoring of us all as individuals and a family. Life flows on.

Today I turn forty. For the length of my thirties I always expected to some day develop some anxiety about aging but so far that hasn’t happened. I find myself happier with and in myself every year, though my body becomes exponentially weaker and more tired every day, though illness and otherness are perpetually isolating it seems.

In a surprising twist for me this year I had some good luck and will be able to take advantage of a scholarship for an online Doula class via DTI. They have scholarships available for both trans and IBPOC birthworkers. I have been passionate about people having the best possible birth outcome and post partum period for near 15 years. Now, thankfully I get to learn how to support that passion professionally, hopefully helping many marginalized and at risk families and helping my own family thrive. So many things could go wrong but for now I am going to go ahead and feel some hope that between my writing, my commissioned knitting, and Doula services that perhaps my family and others may thrive.

That’s the dream right?

But for now we are broke and I feel mildly bummed out that no one really seems to care that it’s my birthday (even though I know I am an adult and adults just don’t get fussed over on their birthday). This is something I seem to go through every year, even though I know it is silly and probably pointless.

I’m taking the weekend off for my birthday. Monday I will have things to knit and things to write. Life will go on just fine, maybe even a little better maybe.

Talking about this gives me anxiety but being poor is not a shameful state, it’s not a moral weakness, it’s not an indication of personal failure…so I am going to talk about it anyway.
My brain is caught in a loop right now, 60% percent running life numbers that don’t quite add up. This started this time because I have another infected tooth, right now during the holidays. So it goes like this…

I need this tooth pulled, which will cost me minimum 100 dollars. We will be able to pay for that next pay day, in two weeks. Also there is something wrong with my ear, it’s hurt for weeks, there is swelling, maybe fluid, it may be another sebaceous abscess. My immune system is so tanked these days, I get other secondary illnesses more easily. I need to go to the doctor for that as well. If I go to the er I will need an extra 20 for antibiotics for that…I’d probably need another 100 to be able to go to urgent care instead, for copays.

Until then I’m just gonna have to take to much ibuprofen and hope I’m not damaging my liver irreparably.

Spending money on medical stuff in midnovember will push back holiday shopping for the kids until the mid December paycheck and limit is to 150-200 spending for 5 children. Ahhhhhh

I have three pending commissions, that will be another 150-200 dollars. Will we have the money for groceries next week? It’s gonna be another tight week. If can I can make 2-6 more commissions by Xmas it will help us with groceries and allow us to buy a small something for each one of the kids. That will exhaust me but we will survive. I have been having difficulty writing often enough so that is a missed payment opportunity. I wish my body would just give me a break. I need to be able to do both. Milton is writing a ton, but he never gets paid as often as I do for it, no matter how beautiful and powerful his writing is. If only I could make sure that would happen. Is that what we really need to get by? I better do the math again.

We will have to wait to go to the dentist for two weeks…

…Around and around I go.

We work hard to take care of our family with the limitations and resources we have but it never seems enough. It can be deeply exhausting, frustrating, and hopeless feeling. We keep going and we always make it, though to often it is just barely so. One way or another my brain has been semi permanently turned into a bad math hamster, rerunning and rerunning those numbers. I’m always hoping we missed something that will help, that will make a lasting difference to our well being. Sometimes that even happens, sometimes we find something, make an opportunity happen that helps.
Sometimes. Fingers crossed